For people with chronic diseases such as rheumatoid arthritis (RA), fatigue can be a plaguing symptom that greatly impacts their quality of life. Additionally, it can be very difficult for family members and friends of people with RA to truly understand how strong fatigue can be.\
While it may be easy to tell someone with fatigue to “take a nap and feel better,” this is the hallmark difference between fatigue and being tired. When you are tired, resting helps. When you are fatigued, it may do nothing.
Dr. Karin Olson, with the faculty of nursing at the University of Alberta, offers some clarity on the difference between fatigue, being tired, and exhaustion. She says that people who are tired may feel irritable, forgetful, and may have muscle weakness after work, but usually rest will alleviate this. People who are experiencing fatigue may have difficulty concentrating, anxiety, difficulty sleeping, sensitivity to light, and they also may skip social engagements which can have family members feeling slighted, and make the anxiety worse.
On the other hand, people who are exhausted may have profound confusion, emotional numbness, a sudden loss of energy, and they may also have trouble both falling asleep and staying awake. Due to this, they are also likely to miss social engagements.
Being tired is not uncommon. According to the Centers for Disease Control and Prevention (CDC), 1 in 3 United States citizens report sleeping less than the recommended 7 hours per night. With a bit of lifestyle change and prioritizing, people in the general population can change this and lessen how tired they are. For people with RA and other chronic diseases, it is not this easy.
Fatigue is often longer lasting than just being tired. It is not improved by resting and can infiltrate every aspect of a person’s life. According to an article in Arthritis Care and Research, fatigue can negatively impact the health-related quality of life for people with RA. This fatigue can have physical, mental, and social consequences.
So, why is fatigue so common in people with chronic conditions?
If you think about it, it makes sense. For people who have chronic conditions such as RA, multiple sclerosis, lupus, depression, Crohn’s disease, cancer, etc., their body is in a constant battle. Even with rest, they never have time to recuperate. The fatigue can be directly related to the pathology of the disease (such as the constant inflammatory state of RA and lupus), or it can be a side effect of medication.
A recent article published some of the perspectives of people with RA and how they felt they are impacted by fatigue. These people explained that after flare-ups, they feel “knocked out the next day.” They also commented on the guilt that they feel for missing social obligations due to the incapacitating fatigue. This guilt, as well as a lack of understanding from friends and family members, can make coping with RA that much more difficult. Not only are you tired all the time and missing out on things that you would love to attend, but your loved ones also do not understand why you are not showing up. So how can you navigate this dilemma?
Managing fatigue with RA
The first suggestion comes from Dr. Vinicius Domingues who is a rheumatologist from Daytona Beach, Florida. He says that he advises patients to first accept fatigue as a symptom of their RA. Once they have done this, they will be better equipped to tackle it in an effective manner. Instead of simply resisting it, acceptance will enable them to look at how they can work to resolve it. He also suggests that small afternoon naps of no more than 30 minutes can be helpful. Any more than this, and you could mess up your sleep-wake cycle and end up feeling more fatigued.
Create a schedule
Other advice also involves sleep hygiene changes. Considering that poor sleep has also been linked to increased pain in people with RA, it is increasingly important that people with RA focus on their sleep habits. Sticking to a schedule of when you go to bed and when you wake up in the morning can help. It is also important that your bed remains free of outside activities. This means do not do work in bed, do not eat there, and even avoid watching TV there. This will help your body become adjusted and know that when you get into bed, it is time to sleep.
Additionally, the blue light of TVs, cell phones, tablets and the like interfere with people’s ability to sleep. Turning off your cell phone before bed and removing any TVs from your bedroom can help you stick to this routine. If you really want to use your electronics before bed, see if they have a warmer light option. This changes the color of the light from blue to a more orange color and is supposed to be better for you right before bed.
Stay hydrated but not right before bed
Staying hydrated is important for all of us, but waking up to use the bathroom in the middle of the night can be problematic. This can mess up our sleep cycle too. Drink plenty of fluids throughout the day, but if you tend to wake up to use the bathroom at night, avoid fluid intake during the 3 hours before you are due to go to bed. This includes alcohol. While that glass of wine can give you a nice sleepy feeling, it can also diminish your quality of sleep and increase your urge to use the bathroom at night. Large meals before bedtime can also result in indigestion that can keep you up or keep you from reaching that restorative “deep sleep” phase.
Just in case we didn’t already have enough reasons to avoid nicotine and cigarettes, here is another: Smoking can make sleep more difficult. So, for that and other reasons, quitting is likely in your best interest.
Avoid caffeine later in the day
Last but certainly not least is our frenemy, caffeine. We love it, we need it, but not after 6 p.m. Do yourself a favor and put the cup of joe down. Even earlier in the day it can trick your body into thinking that you have more energy than you do, which can result in even more fatigue.
Then there are the social commitments. The pressure and desire to stay involved can be intense, but listening to your body is important. If you are feeling guilty, try talking to the people in your family and friend groups. Sometimes all they need is a little explanation to understand that you are not flaky, and that this is really a symptom of your disease that you are working hard to manage.
By talking about it with the people you love, not only can you strengthen your relationships, but you can also help get a little more support when you need it.